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      Welcome   01/25/2017

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CHfather

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CHfather last won the day on April 24

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  1. What they said.
  2. urs, if you haven't seen these, you can click on them (thanks, Jeebs) Alteration in nature of cluster headache during subcutaneous administration of sumatriptan Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients On the other hand (and these subjects were overusing triptans). . . Sumatriptan overuse in episodic cluster headache: Lack of adverse events, rebound syndromes, drug dependence and tachyphylaxis
  3. I would just click the "like" button, but this is far beyond that. Thanks so much.
  4. Thanks for the guidance, Jeebs. I was just copying and pasting the links; never noticed the link thingie. MST3k is good. Of course, if you're jonesin' for some and you don't want to splurge on Netflix. there are tons of full-length older episodes on youtube, if you can tolerate non-HD. (Heck yes, I'm old but I'm hip. I can say "jonesin' " with authority.)
  5. Well, for most people pred taper only works while on the taper, and sometimes/often only at the higher doses (not while actually tapering down). Its principal purpose, as Pebbles suggests, is to tide you over until verapamil can kick in. If you can't get to a doctor, hence can't get verap, the effects of the pred might wear off before or during your travels. Sometimes the pred will kick the cycle, or the cycle will be ending anyway, but we have story after story here of only temporary effects from tapers. The best option is to get to your doctor and get proper prescriptions for everything . . . but that sounds like it might not happen, and even then, it's possible that a sensible doctor won't prescribe verap if you're going to be traveling for a while, since verap needs to be monitored in early stages. I would still seriously consider busting if I were you. Not to add to the bleakness, but I suppose you might know that air travel triggers attacks for many people. At least, be sure you have energy shots/drinks with you on the plane; even better, small amounts of some busting substances placed under the tongue will help abort attacks (though of course having them at the airport is a bit risky). Too damn bad that the UK banned rivea corymbosa seeds -- but you could probably also get those from the Netherlands, too. Try to make arrangements for O2 in Las Vegas (and Greece, if possible). Check with your O2 supplier there, because they might be able to make arrangements for you. At the least, bring your prescription with you and maybe you can get it filled by a supplier in LV.
  6. Sorry you're in such a bad way and a tough spot, Steveo. From what you've written, I'm assuming you have no access to a doctor. I'm kind of gathering that you're in the UK (although the times in your message aren't consistent with that). If that's where you are, what about getting truffles from the Netherlands? I think they'll fill a mail order, or maybe you would have some way of getting them directly?? (Assuming that you don't have any resources among your acquaintances for busting substances.) If you're not familiar with busting, it's using psychedelic substances, potentially at subpsychedelic levels, to treat CH. You can read about it in the numbered files in the ClusterBuster Files section. You would have to be off the Zomig, but it sounds like that might be going to happen anyway. In the short run, when it sounds like you have practically nothing, you could try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. That can reduce the severity of an attack, or sometimes even abort them. In the future, you might consider asking for injectable sumatriptan instead of the spray. With most injectors, you can split the doses and make the stuff last longer. (If you've been using the Zomig with most attacks, it is probably making your situation worse, with rebounds, etc. Ultimately, of course, you want to be as pharma-free as possible.)
  7. You'll have to show me how you did that link, rendering silly my many months of whining and complaining -- but don't show my right now, because I'm busy watching the return of Mystery Science Theater 3000 on Netflix.
  8. I wish there was more new to report (and others may be more on top of this than me). 1. Batch, as I understand it, is now recommending relatively small daily doses of benadryl as part of the D3 regimen, to be increased to full recommended dosage during high pollen seasons. 2. Batch has recommended a new O2 strategy, which you can find by putting "red neck" into the search bar. Someone here said it really worked well for him. (One new frustrating thing is that this new message board doesn't handle internal links, so I/we can only tell people where to look things up, rather than linking to them. Also, can't (or at least I can't figure out how to) attach things or post images. Otherwise I'd be posting Jeebs-as-Borat images to introduce you to the newer folks. But I digress.) 3. dlnmerced put together advice for creating LSA from HBWR that many people seem to find helpful (over in the CB Files section; also posted at FB) 4. The group put together a nice list of "triggers" (not necessarily instantaneous) that had some surprising entries for me. 5. Moxie is apparently doing a lot better, and hasn't been heard from much. 6. Many seem to think that the clinical trials about monoclonal antibodies are quite promising, and, as you probably saw, there's a psilocybin trial going on at Yale. 7. A fellow said that putting his feet in the bathtub with very hot water helped reduce/abort his attacks; some others seem to have found that helpful, too, at least for temporary relief. 8. Another fellow said that drinking a combo of water, fresh lime, and baking soda helped him during attacks. He hasn't reported back and I don't know whether others have also had positive experiences. My daughter enjoys it at least as a "break" during an attack, though she won't say for sure that it makes any difference. 9. A very helpful fellow has suggested that the only major CH med that blocks busting is probably triptans. Not verap, not steroids. I don't know if anyone has tried busting while on steroids. 10. In addition to the stalwarts, many very helpful newer folks have helped fill the unfillable Jeebs void. I would list them, but then I'd leave some out. Most kind of come and go, but when they're here, it's great. 11. I don't know the status of DALT. Maybe you do from FB. I'd say that in reports here, there were as many disappointing trials of it as positive ones. It's my vague understanding that it's hard to get now, but maybe I'm wrong about that. 12. There was something -- DMT, I think -- that someone significant (maybe Flash under a different screen name?) said was what he used, and it worked great. I was interested, but the topic just kind of fizzled. 13. Registrate will be unhappy if I don't mention his app. He's worked really hard to create it, get it right, and try to get it into use. 14. We pooled our funds to buy a tiny drone to track the whereabouts of disappeared but still beloved members. The basic drone itself was relatively inexpensive, but it was pricey to get the kind that turns into a giant corkscrew and flies up the butt of any said member who fails to respond to three or more PMs. Well worth it, I believe.
  9. You can use a lot less Imitrex per injection (2mg instead of 6mg). Take a look at the "Extending Imitrex" file in the ClusterBuster Files. I don't know about that coldness with the O2 . . . maybe others can comment. You can inhale through your mouth only, and the "ClusterO2 Kit" has a breathing tube that can be used instead of a mask. Don't know if that's helpful.
  10. Marty', typically prednisone is a "bridge" medication to give you some painfree time while the verapamil takes effect. (That seems like a very long taper to me, but I might be wrong.) What dose of verapamil are you taking? It's not unheard of for people to need ~960mg/day to be effective when they are in cycle. What about Imitrex as an abortive? Can you say more about that oxygen thing? Cold air from the mask bothered you? I suggest that you look at the vitamin D3 regimen in the ClusterBuster Files section of the board, and while you're there, took a look at busting (the numbered files), too. In the short run, a 5-Hour Energy might work better than just the coffee (most people like them very cold, but you might not), and speaking of hot, some people have found that it helps them to put their feet into a bathtub with water that's about as hot as they can stand.
  11. chh, Cylinder is better (except for getting the refills) -- I just wanted to be sure that's what you had. Since you can buy things through Amazon, you can get a non-rebreather mask from Amazon. Quite inexpensive, but of course I don't know about shipping. Sorry about that experience with the D3!
  12. Ecaseson, a lot of folks find that starting on the O2 with an energy shot such as 5-Hour Energy helps. Have you tried the D3 regimen (in the ClusterBuster Files section of this board)? Higher-flow regulator, which you can get at amazon, and better mask do make a difference (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit) If you enter "red neck" into the search bar at the top right side of the page, you'll see a breathing strategy recommended by Batch, an O2 guru, which has helped many people.
  13. 30-60 minutes is way, way too long. Should be 15 minutes, at most. Please tell us more about the "big tube" you are using and the regulator (what liters per minute) and the source of the oxygen -- is it coming from a tank/cylinder/canister, or from a machine. Is there a bag on the "big tube" that fills with oxygen and then empties as you inhale?
  14. A lovely message, Shadawn. Thank you for taking the time to let us know.
  15. I think you'd capture it more generally with "capsaicin" or, probably better, "hot peppers." Sinus Buster is a product. Of course, as we've seen, people administer the peppers in a range of ways, from eating spicy food to sticking one thing or another in their nose.